I need some help please to figure out what's going on with me. My GP took me off my thyroid medication back in February. Since then I've had all sorts of ups and downs and hypo symptoms.
My doc says my thyroid results show that I no longer need thyroid medication and I'm doing fine. But I can't stay awake! I am getting between 7-9 hours sleep at night but I'm falling asleep before lunch, every time I sit down, at the table even. I drop my phone and my husband knows when he hears the bang I have nodded off when I'm reading, I fall asleep knitting. By the time I make tea I'm exhausted and my heart rate is way up. I fall asleep in the evening sometimes I wake up and have to go to bed because I've woken up and it's very late. All my doc is suggesting is they check my sleep because my thyroid numbers are so wonderful off levo it can't possibly be my thyroid. I've had all my bloods done and everything looks good vitamins, minerals, liver, kidneys, full blood count is great so it's not that either.
The odd thing is my thyroid results are better than they were on levo apart from TSH it has gone up. On 50mcg levo it was 2.4 now without it it's 4.6. the odd thing is I've had two thyroid tests since February. I had another one yesterday because the sleeping is getting worse. Both times T4 was 50% in range and T3 is just over 50% without medication. I was struggling to get anywhere close to that on levo but I was awake? I hope I get the latest results today at some point. Any idea what's happening to me when T3 is higher than it has ever been for me but I feel more hypo now than I have ever been. I'm piling on weight too because I have no energy.
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magsyh
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previous post said they took you off levo in feb ,to see if it was that which was causing palpitations and anxiety, as they could find no other cause for them .
so , in the last 4 months have the palpitations and anxiety got better ?
Previous post also mentioned TSH was 2.7 (0.35-5.3) T4 12 (9-20) at 4pm. after 14 weeks off Levo.... and TSH has now risen to 4.6 which must be pretty close to top of TSH lab range. in a few months more and it may well be back over range again and then they will have to start all over with a 'sub-clinical hypo' diagnosis (ie 2 x over range TSH 's, 3 months apart + symptoms , can then give trial of levo to see if resolves symptoms)
.. or i suppose, in theory it could settle back down again ..
but my opinion .. if doc is suggesting "in range results after 4 months without Levo, proves no thyroid problem" then he is ignoring the blindingly obvious trend of TSH result doubling since last test .
I hope they are intending to keep monitoring TSH level for a while ( since that is all the NHS are concerned with anyway)
Get them to agree to reinstate your Levo if TSH goes over range .
The 4pm test was the one the doctor did and they think a T4 of 12 is perfect. The other tests I've had done in the morning with a TSH of 4.6 is with medichecks and that is over top of their range at 4.2.The palpations and the anxiety hasn't changed but they think it's down to something else now and going by that 4pm result they say it proves I don't need levo. All the tests I've had to pay private because they aren't interested. They are blaming my fatigue on sleep problems.
"The 4pm test was the one the doctor did and they think a T4 of 12 is perfect."
yes but what was the NHS TSH result ? they can't have their cake and eat it .. either TSH tells them everything they need to know or it doesn't .. if they have their own TSH results showing it rising to near top of range after coming off levo .. then as soon as it goes over range they have to start looking into sub clinical hypo .. which by definition means that fT4 is still in range , even if they do consider it to be 'perfect'.
Sub-clinical hypo still can be treated with Levo (according to NICE guidelines)
Sub-clinical hypo is defined by NHS as "TSH over range but under 10 , with fT4 still within range".. and it doesn't matter where fT4 is within range.
They repeat test after 3 months to rule out a temporary raise that self resolves, and if TSH is still raised then it's sub-clinical hypo.. the fT4 level has nothing to do with it as far as they are concerned.
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